Joseph and Julie Moon have already spent more than $22,000 on her cancer drug treatment, which is not funded by Pharmac in New Zealand. Photo / Supplied
Joseph and Julie Moon have already spent more than $22,000 on her cancer drug treatment, which is not funded by Pharmac in New Zealand. Photo / Supplied
Joseph and Julie Moon are abandoning their dream lives in New Zealand, forced to return to America to afford the drug treatment she needs to battle terminal cancer.
Joseph Moon doesn't remember much about the three weeks after he found out the love of his life had been diagnosed with lung cancer.
"I cried a lot, I cried in the morning and at night. That's pretty much all I remember. She didn't, she was just real strong and just dealt with it."
Now, one year on, the fear of losing Julie is the first thought that enters his mind when he wakes up and the last thing he thinks about each night before he goes to sleep.
"She means everything to me and without her, I am nothing ... I wish Julie did not have cancer.
"I'm just focused on doing whatever I can to save her."
Joseph and Julie Moon have already spent more than $22,000 on her cancer drug treatment, which is not funded by Pharmac in New Zealand. Photo / Supplied
The "brutal reality" is that the "miracle drug" keeping Julie alive, known as Osimertinib (Tagrisso), costs them nearly $11,000 a month in New Zealand because it is not funded by Pharmac and it is not covered under any health insurance.
That has meant selling his boat and car, and remortgaging the family home to so far pay more than $22,000 for the drug treatment.
Julie and Joseph Moon, left, attended their son Matt's wedding to Jessica on Friday. They are having to leave their family to return to the US. Photo / Paul Taylor
On Friday, the couple watched their son marry his soulmate while preparing to leave them, their daughter and grandkids in a week to move back to the United States indefinitely.
"I'll do whatever it takes to save her, even if that means we have to live in a basement to avoid Covid."
In the US, Tagrisso will cost them just $700 a month under the country's (Affordable Care Act) ACA insurance.
"In some ways we are lucky, lots of people don't have the money to move to another country and can't afford the drugs in New Zealand so die," Moon said.
"It's cruel and unfair, and I can't believe in a public health system inequalities like this exist."
A Givealittle page has been set up to support the family and has already raised more than $8000.
Although lung cancer advocates say Tagrisso could benefit more than 200 New Zealand patients a year, Pharmac say more evidence is needed before its officials can make a decision on funding it. So far, that process has taken 10 months with an update coming in "due course".
Meanwhile, Julie - and hundreds of others in her situation - are running out of time.
The "fit, non-smoker" was diagnosed with stage 4 metastatic lung cancer in September last year when the couple were on holiday in the US, where they were born.
She started experiencing shortness of breath and the doctor assumed it was asthma, as she had a history of the illness, and gave her an inhaler.
Within days she was rushed to hospital with a collapsed lung.
Julie Moon was diagnosed with terminal lung cancer in September last year and the drug keeping her alive is out of reach in New Zealand. Photo / Supplied
They returned to New Zealand where they have been living for the last 19 years while paying health insurance. Julie started on a publicly-funded drug which came with "horrible side effects" including severe rashes.
Unfortunately, the drug was ineffective and by July her cancer had spread to her liver, lymph nodes and abdomen.
Her doctor gave her months to live, Moon said.
The couple and their two children moved to New Zealand and became citizens here after Moon "fell in love with the place" during a working holiday.
"I remember our children's eyes being wide open in wonder when we first arrived, they couldn't believe the beauty in front of them ... neither could we. We felt so lucky to be close to the beach."
They never expected the country of their dreams to be one of the few places in the world that could not extend Julie's life.
Health Minister Chris Hipkins told the Herald on Sunday that while he "absolutely understood" why New Zealanders suffering from lung cancer wanted the drug funded, good evidence was needed and he respected the independence and impartiality of Pharmac.
"It is not for us as politicians to second guess the experts at Pharmac about which drugs it purchases," Hipkins said.
Joseph and Julie Moon are moving to the United States where the drug keeping Julie alive only costs $700 a month.
A centrepiece of National's health policy is $200 million over four years for a dedicated cancer drug fund. Labour is to announce its health policy next week.
Pharmac's director of operations Lisa Williams said it would cost them about $8000 per patient per month to publicly fund this medicine.
"The Pharmacology and Therapeutics Advisory Committee (PTAC) met to provide advice on a number of funding applications, including for Osimertinib, late last month," Williams said.
She said the record of that meeting would be published on Pharmac's website in due course.
"Osimertinib is also expected to be considered by the Cancer Treatments Subcommittee,
who will provide Pharmac with specialist advice," Williams said.
"While we recognise the challenges faced by patients and their whānau, and their understandable desire to try new treatments, our job is to look at all the evidence and make a decision that is in the interests of all New Zealanders."
